Monday, February 27, 2012


Curebie... I had never heard that insult before. A blogger I read, Jo Ashline who tells it like she feels it over at “A Sweet Dose of the Truth,” apparently pissed off a bunch of people and got herself labeled as a curebie (as well as a whole bunch of other things).

I guess she earned this by getting all excited that her kid (nine years old with Autism) read his first word, and she yelled out something celebra-trashy along the lines of “Autism can suck it!” Once I started reading the comments and ensuing posts, connected posts, and rebuking posts, I realized that the Autism community is fractured much like the Ds community.

A couple years ago I wrote a post questioning whether or not I would get the “cure” for my daughter if one became available. The answer turned out to be a solid maybe.

Kimani was just nine months old when I wrote that post. Now three years later, I have a different answer. A resounding “Heck yeah!” (as long as it didn’t come with risks... I don’t take risks with Kimani, I just don’t.)

Does that mean that I don’t love her or accept her? No, it means I can separate the effects of an extra 21st chromosome from the other 46. I don’t see a possible cure as something that would be a magical re-do where Kimani swallows a pill and wakes up with 46 chromosomes and an altered face. A “cure” would likely be something that ameliorates the day-to-day effects of that extra chromosome. Maybe it would take away the risk of Alzheimer’s and the inability to articulate speech and replace it with for twenty or so IQ points. That is why I support organizations like Down Syndrome Achieves that are advancing research, legislation, and education for people with Ds.

Does that mean I don’t view Down syndrome as a blessing? Yup, I don’t. I do, however, think of my daughters as blessings. You understand... I don’t see my daughters as Down syndrome, instead I see them as people who have some differences caused by Down syndrome. Some of those differences are quite endearing and valuable, and I consider myself fortunate to experience a close relationship with my girls. So while I have been blessed by the people in my life who have Down syndrome, I don’t think them having Ds in itself is a blessing.



You know what I would like a magic pill for? TBI... traumatic brain injury... the result of meningitis, or high fevers, or deep freezes. To all the pediatric neurologists out there, please please I beg you, make me a Curebie.



L.L. Barkat said...

I love how you think, how you say what you think so eloquently and poignantly. Rare, you are. Do you know that?

Brandie said...

Thank-you for giving a voice to how I've felt about my daughter and the "cure". Perfect post!

Julie said...

I've thought about this a lot. I love both my littles more than a bunch. They make me laugh. They make my heart grow three sizes every time I look at their sweet faces. Heck the reason we have the girl is entirely because she was born with Ds. But as happy as they are, they struggle. Jack has a very limited vocabulary and Dasha has not one word. And as they get older, I see the gap widen between what they can do and what a typical child that age can do. It breaks my heart. I love them just as they are, but if I could make reading and writing and math a little easier for them, wouldn't I? Shouldn't I?

Anonymous said...

I'll admit it: I have mixed feelings about this. I have no desire to change Finn . . . and yet, would I eliminate or minimize the difficulties and risks Down syndrome causes him? Of course. It's just hard for me to imagine one being possible without the other. I would never want the essence of who he is to be changed. But no, I don't see Ds as a blessing.

Chromosomally Enhanced said...

curebie! that rocks! well said I do not love Ds...I love Maddie...and I have said many times I would not change Maddie! but I would take away what hurts Maddie...TEF/EA, heart, and yes the delays...cure there is no cure not for even my "normal" child...but if a pill could "fix" Maddie I would do it..heck if Maddie could eat that would be a great start! smiles

Jo Ashline said...

Fabulously put! Thanks for weighing in on the subject with your own perspective! Love it.

RissaRoo said...

This really has me thinking. I have a child who really struggles with dyslexia and CAPD. If there were a cure, would I get it for her? You bet! I'd move heaven and earth to eliminate the struggles she faces and the frustration she feels. I doubt that anyone would question this, in fact I bet there would be cases of government intervention if there were a cure for LD and parents refused it for their kids. Why is DS different? Because it is genetic? But my daughter's dyslexia is also genetic, it runs strong in my hubby's family. I think the problem is how we see our kids...I do think it's wrapped up in whether we consider that a child "is Downs" or "has Downs". Nobody would question getting your child glasses if they were born with a vision problem, or suggest that you don't love them "just as they are" if you did so. Maybe what people are really asking when they ask about the "cure" we really accept our kids 100% as they are, and really value them as fully as we value our typically developing kids? Of course. Anyone can see that you do love your 3 girls this way. And DS does come with blessings and Dyslexia does too, and you learn something from this path that you wouldn't if you were on another. I would never deny that. But wanting to take away pain and struggle if there were a way to do this in no way lowers the value of a child and in no way suggests that we don't love and accept them 100% the way they are. I can't really fully understand the issue since I don't have a child with DS, but it sure raises some interesting thoughts.

Nikki said...

Really interesting post, thanks for sharing.

Nikki - blog design to support special needs orphans in India!

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